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MY LATEST ARTICLE...

(Has been Published on 'The F word' today- a prominent contemporary feminist website. Apologies for lack of blogs here but a combination of getting the above edited, a bad couple of weeks MH wise and then going down with tonsillitis has made me rather quiet! One or two more blogs are in the pipeline though, so hopefully October will be a more fruitful month for Syncopated thoughts.)

Jx

Mantra

I’ve heard it argued that you shouldn’t say ‘I love you’ too often. The phrase loses it’s power, they say. The words become meaningless, hollow. They don’t send shivers down your spine like the first time they were whispered in your ear, the impact is lessened, and soon the phrase becomes bland, like saying ‘what would you like for tea?’ or ‘it’s raining again, it’s supposed to be summer.’

I am here today to testify. Me and Owen say ‘I love you’ to each other at least fifty times a day. That’s no exaggeration. If anything, it’s a conservative estimate. On days where he’s at work sometimes I pick up the phone, dial his desk, wait till he answers and say ‘I love you’ then hang up.

He usually rings back:

‘I love you too’

It is something we do, something we have always done.

Yet the words have more power now than they ever did the first time: spoken by nineteen year old Jen, my nervous laying down of the cards before I even knew what those words really meant. I knew that by saying them, I crossed a line that would shape us forever. It was a week into the relationship. I said them once. It took Owen three months to respond. Maybe some people would have taken that as a snub. I didn’t. I knew very quickly that this would go the distance. But Owen is more tentative, more hesitant. He likes to be sure about things. He likes to think before he acts. I knew this from the first day we met. I had to accept him for the way he was. So for three long months I waited for the answer I wanted to hear. When I finally heard the words, I knew they were heartfelt. I was curled up on his lap. I had been crying. I don’t remember why. Owen was stroking my hair. His hands fell gently on my scalp, weaving patterns among my follicles. Nick cave was singing softly in the background. ‘Into my arms, my love… into my arms.’ I still don’t know if that was deliberate. He said ‘Jen, I think I love you too’. I fell to sleep with those words ringing in my ears. I smiled and dreamed about us holding hands, our ringed fingers interlocking.

Now its seven years later, we are married. We have said those words almost a million times. They have acquired a history. They have become a ritual. They are a part of us. There are stories I can tell about those words. Some of the times we spoke them stand out. Like the time Owen sang them to me drunkenly on our wedding night before he fell asleep and I felt happier than I ever have in my life. Or the time I said them to him when he had taken his first pill and he looked back at me in sheer delight and awe, like I had given him the secrets of the universe in one single sentence. But mostly when I think of the phrase it is almost as an invisible thread, weaving in and out of our lives, binding us tighter together, strengthening the bond between us.

It can mean different things. Rather than simply being a statement of devotion, these days there’s a whole art form involved in interpreting the sentence.

‘I love you’ can mean, amongst many other things:

‘Shut up’

‘That joke wasn’t funny but you still make me laugh.’

‘I want to have sex.’

‘I’m going to cum.’

‘That food was nice.’

‘Please?’

‘Thank you.’

‘You’re annoying me.’

‘I can’t imagine life without you.’

‘You rock my world.’

‘Goodnight.’

‘Stop being silly. God, you’re a plonker.’

‘Goodbye.’

‘I’m proud of you’

‘Good luck.’

‘I’m with you.’

‘Happy birthday.’

‘Don’t leave me.’

‘I’m sorry.’

‘Get on with some work!’

‘That’s so typically you.’

‘Do you promise?’

‘I promise.’

‘I want to be with you forever.’

‘Do you love me?’

‘I love you. I mean really, truly, so much I’m going to explode.’


*******************

So the list goes on. We never define what the sentence means at the time. We just say the words and we both understand. It’s a language within a language. It is comforting and inspiring and reassuring and challenging. It’s sometimes a little stifling but mostly utterly utterly freeing.

Has the phrase lost it’s impact since the first time?

Well, yes and no.

The words are just words. Their power waxes and wanes with the force that moves them.

When they are said out of habit they are meaningful and nourishing but not knee knocking. However, even now after seven years, and I would hedge a bet that even after twenty seven years we will still be able to pull a mind-blowing ‘I love you’ out of the bag. It’s all in the context. The power is in the chemistry between you at the time. ‘I love you’ is the product of a reaction, a winning formula. I savour the words, I roll them round my mouth and taste them on my tongue. I have never found a more potent mantra to help me through this life. It might be a cheesy line to finish a rather cheesy entry, but ‘I love you’ is the most important thing I have ever heard, or will ever say.

Pure Nostalgic Soppiness

I’ve been sorting out the ‘my documents’ section of my computer which hasn’t been reorganised since the second year of Uni, back in 2002. It has been quite some feat! I have found millions of unfinished blogs, introductory paragraphs for short stories and lots of embarrassing photographs.

Also, over the course of this frustrating dragging, sorting and deleting of files, I came across some old poems. They made me feel quite nostalgic so I thought I’d share the ‘best’ (I use the term loosely) ones on this blog so they’re not just languishing away on my hard drive for the next five years.

The following three are love poems, written over the course of mine and Owen’s relationship. They are displayed in chronological order. ‘Marked’ was a poem I wrote the morning after the first time we had sex without a condom, I was wrapped in a blanket waiting for Owen to make me a cup of tea and feeling very taken, very in love. ‘Because you must love me’ was written in the aftermath of a silly argument as a reconciliation gift, and ‘Victory’ was composed on the beach outside our Honeymoon apartment, three days after we had married.


Marked

It smells
sickly sweet
running down
my insides.
I thought it
would waft up in
savoury swirls.
I thought it was
supposed to be
salty.
It trickles out of me
soaking through my
stolen boxer shorts.
I think of them now,
swimming inside of me,
tiny little tadpoles
that all have your face.


Because I guess you must love me

I’m sorry for my clothes,
on your bedroom floor.
For never shutting the toilet door,
For being too tired and not rubbing your head,
my knickers kicked carelessly under the bed.
For turning conversation too often on me
and endlessly wondering what the future will be.
For eating all the pickled onions in the jar
and constantly dreaming of being a star.
For not washing up
and picking my nose
and ignoring five day old
stains on my clothes.
For talking and talking,
dragging heels when I’m walking
for interrupting john snow-
and finding it hard to just flow.
For not being bothered to go on top,
for keeping on going when you ask me to stop.
For wearing your dressing gown and burning the sleeve,
and just never knowing when I should leave.
For farting and wafting it under your nose,
for admiring and lusting then stealing your clothes.
For my hair brained schemes, my silly ideas
my cigarette breath and not cleaning my ears.
For the occasional tantrum when I don’t get my own way
my inevitable tendency to overlay
tell me this darling:
why the fuck do you stay?


Victory

He swims
up and down
the shore,
head bobbing
like a beautiful buoy
in the ocean.
His skin
glistens
in the sun,
his eyes
sparkle
like the water
dripping down
his body.
And I think
fuck me
how good it is
to witness
death
being cheated
by flesh
and blood.
How we've lost
before we've started
but our small
victories
are sips of
water
on a long
hot day
in Spain.

Serve the Servants

The 11th to 17th of June is national carer’s week here in the UK. I’m not usually a fan of weeks for this and days for that as I think they can often provide a pinnacle of focus for that week’s highlighted charity or issue which then gets forgotten about until roughly the same time next year. They are horribly media centric – perfect for journalists and bloggers who need a prompt for something to write about that day (self obviously guilty here). The activities that surround them are usually very cheesy or horribly decadent, designed primarily to pull on heartstrings and generate direct debits from as many people as possible. However, then I start getting into my feelings about charities in general which I surely will another time but not now. For the time being I am going to take the sound bites I’ve heard on the news and Woman’s hour as bait and talk a little bit about carers and caregivers rights in this country.

I feel qualified to talk about this as it is a subject that is deeply, deeply close to my heart, even though I wish it wasn’t. In an ideal world it wouldn’t be me who was writing this blog at all, but Owen- he’s the expert on this subject and I would love for him to guest blog on this page. I’m sure he, circumstances permitting, would have gladly obliged. Like a lot of people in his position, he’d love to have time just to write articles about things for fun, too. However, for his sins Owen is my long term carer. As well as being an ambitious full time PhD student (sans funding) with a two hour commute to his University, he additionally has to look after me and work two jobs spread over thirty five hours a week to support us both enough just to scrape by. Today, Owen got out of bed at six am, started work at seven, and isn’t planning on stopping until midnight or so. It has been this way for a long time now; he barely even takes a day off. He usually falls asleep at the keyboard sometimes around one o’ clock and staggers to bed after I have spent ten minutes giving him a list of reasons why he will make himself sick if he doesn’t at least get some rest.

We don’t get any help from the government, nor have we ever done, for many complicated reasons, not least the fact that he is a student and financial help for those in higher education is pitifully hard to come by, even if your wife is so sick she can’t get out of bed and doesn’t know what day of the week it is. We don’t get any support, despite the fact that, as part of the army of unpaid carers, Owen and those like him are saving the government billions of pounds in labour costs – for the government to actually pay these carers the same as paid professionals the work they do would involve spending the same again as the annual NHS budget (57 billion). In terms of carers, Owen is one of the relatively lucky ones. Most of the time I am fairly high functioning, and can do things for myself, even if they are within a limited sphere. However, for the last five years I have been unable to work for more than a few weeks at a time and several times a year we will have a bad spell where Owen has to really take over.

During these times, which can last from a few days to a few months, Owen suddenly finds me incapacitated to the point that he has to do all my domestic jobs; the cooking, the shopping, the cleaning etc which are time consuming and annoying, but that’s only the tip of the iceberg. For twenty four hours a day, seven days a week, for long stretches of time I might go into ‘I want to die’ mode, which (as I guess the name gives away), means I am actively suicidal. So, not only does Owen have to do his studies, his teaching, papers and conferences, as well as everything around the house and his mundane paid employment in museums and cafes but he has to spend countless hours watching and caring for me. On the days he doesn’t call in sick at work because he’s too scared to leave me (I think most of his employers think Owen’s immune system is pathetic when in fact it is steely) he will phone me from his desk and we will talk in code every fifteen minutes to make sure I am still alive. It is embarrassing for me to admit, but during these times he becomes responsible for everything about me; from making sure I eat, sleep, wash, dress, brush my hair, and clean my teeth and all the other things that most couples don’t think about. It is not unusual for him to take hours in the morning just getting me out of bed and looking like a human being. At night time, he has stayed up all night, for days on end, just watching me, making sure I don’t do anything daft. He takes me to appointments, liaises with doctors, psychiatrists, nurses, he learns names of drugs and therapies, negotiates what medication I should be taking when and makes sure I take it, even though this can lead to some blinding rows. He sits with me whilst I cry, listens to me for hours moaning about what an ugly bitchy shithead I am. He eats microwave food with blunt cutlery because all the knives are locked away. He accompanies me on bus and train journeys because I can’t face them alone, he walks with me in town because all the people can trigger psychosis on a grand scale.

These are just a small selection of the daily sacrifices Owen will make to give me the best life he can. Our relationship turns, (sometimes overnight) from one of absolute equality to total dependency. My personality is transformed and my functioning is grossly impaired. Yet Owen just gives and gives and gives. He does all the above and more, and has never, ever complained. Sometimes he gets tired and down with it all, sometimes he can get very upset, but has he ever snapped at me or lost his patience? Never. Not only does he do all this but he tries to give me a good quality of life; despite being so tired that he needs twenty five cups of coffee just to get up in the morning, he tries to do this all with a laugh and a smile, a hug and a kiss, a joke, a giggle and lots and lots of sympathy. He tries, whenever possible, to keep me out of hospital. He cares for me with dignity and respect and makes sure my wishes as regards my treatment are upheld as much as is humanly possible. He slaves away to make an awful situation bearable, and every night before I go to sleep he says to me ‘I believe in you, this will get better and even if it didn’t I regret not one moment: I would do it every day for the rest of my life.’ And then he is asleep before his head hits the pillow.

I know. I know. If there ever was such a thing, I am one lucky manic depressive.

But, as special as he is, Owen is not the only one.

Up and down the country there are friends, relatives, neighbours all caring for people they love not for monetary value or job satisfaction but because they feel it is the right thing to do. Many have given up well paid jobs to do so, and have to eke a living out of the pittance that the government provides for the ‘lucky’ few carers it deems eligible for financial help. At the moment, the maximum weekly carer’s budget is around £48.68, (for a minimum of 35 hours a week- equivalent to £1.39 an hour) which is significantly less than many of the other benefits going and many carers find themselves in financial dire straits. These are real people with real lives every day losing their houses, jobs, cars, and possessions in order to give their sick loved ones a life away from institutions and the slow decay they bring. The support they generally get from the system is laughable. Their hard work is often unrecognised or treated as a nuisance, their relationship with the patient undervalued. When they ask for vital support, for respite care, for some kind of state provided home help in addition to their unpaid labour, for some much needed money or equipment, it is usually an uphill struggle all the way. Forms are piled upon forms for even the most basic means of assistance and the lists of excuses soon mount up as to why you are not eligible for this or that. Many carers feel like the authorities are entities they have to constantly fight, rather than vehicles they can turn to for support. The strain is enormous, the pressure huge. Yet many of these carers are themselves are vulnerable people. A huge percentage of them are elderly, often hardly able to move properly or fully function themselves. On the other end of the spectrum, some are mere children who find themselves looking after their parents and siblings instead of concentrating on their schoolwork or social life; terrified that if they, as a ten year old child, don’t keep the family functioning then social services will get involved and split the family up. These are truly the unsung heroes of our society, for those people who have never had to care for someone day in day out then all I can say is you have no idea what it is like. I have no idea what it is like and I’m a lot closer to the action than most.

I sometimes ask Owen; ‘what do you get out of this?’ After all when we met he was just turned eighteen. He was barely an adult with patchy facial hair and a passion for computer games. He is not a super stud but he is not a bad looking bloke and he has a great personality. I think at university even if he couldn’t have pulled the Julianne Moore look-alike that he dreamt of, he could have at least chosen someone whose idea of an evening in wasn’t drinking a bottle of whiskey and locking herself in the toilet with a razor blade for three hours. To this day it mystifies me why he didn’t go running for the hills. I would have done. I have asked him this question a number of times. Sometimes I am genuinely curious, sometimes I do it when I beat myself up. He has only ever responded with these four words: ‘Jen, I love you.’ and refuses to be drawn any more on the matter.

It is, clearly, not all one way. I support Owen in many of the things he does and bring happiness into his life in many capacities other than the ones I have mentioned. Most people who care for someone deeply love the person involved and find caring for them rewarding and fulfilling, even if it is sometimes a soul-destroyingly exhausting and strenuous process. But it seems to me that it is precisely this love and devotion that the government are exploiting. They know that Owen and the six million others like him are not going to just turn their backs on their loved ones. It basically boils down to this, why pay someone for something when they are willing to do it for free? They know that Owen means it when he says ‘Jen I will do anything for you’. Even if that means year upon year of little sleep, no money, overwork and battle after battle with the authorities. When the alternative is to see their loved ones go into hospital or residential care, out of their lives and control, often putting them at risk of abuse and exploitation many carers simply say ‘over my dead body’, and battle on. That is what Owen and the rest of my family have done for me and I owe them my life several times over.

Carers, in my experience, are not asking for much.

They are asking for:

a) Enough money to provide them and the person they are caring for with a basic standard of living where crippling financial worries do not make an already fraught situation 1000 times worse.

b) Recognition of their efforts and respect of their own wishes and needs as well as the patients.

c) Respite care and more short term intensive inpatient services for when times get really tough. When they judge the situation to be unmanageable, that is, not some government crisis team’s checklist.

d) Specialist help for the things they cannot afford to provide themselves, or are not trained to do.

There are other things, but these are the main complaints I find most carers have. Of course, as a patient myself, I do realise there is a debate around giving carers too much power, in that I believe as a patient it is me who should always have the final word, if I am able to do so. Some carers may have ulterior motives and it is the authority’s job to ensure abuses do not happen. However, the truth of the matter is ‘what’s the alternative?’ If, as a patient you are not supported by those around you then there might be some limited care in the community stuff, but if you have a time of crisis or get too ill to cope, you will end up in an institution. Enter a hospital or a residential environment and you relinquish all control anyway, to people who are much more likely to abuse and neglect you than your own friends and families. Ask most patients who’d they’d rather have the power over them and I’d hedge a bet it wasn’t the syringe wielding electro-shocking multidisciplinary team at the hospital, but their loving husband, or their mum or dad or their grandparents. In most cases, patient’s rights are the one and the same as carer’s rights. These devoted caregivers are sacrificing so much and getting so little in return. That’s why we, (especially those of us who are on the receiving end of their love and attention) should be fighting together to get these unsung heroes the rights and privileges they deserve.